Hey Everybody! I recently made this new brain/neuron fabric and gift wrap! I made a giant brain pillow for my psychiatrist too, and he seemed to like it which was awesome! :) Here are some pics! Also, the fabric, gift wrap, and wall paper are available on spoonflower here: http://www.spoonflower.com/fabric/3713721

This is a survey by NAMI about experiences with ER mental health services. I believe the survey is for both people with mental illness and friends/family who have experienced the ER mental health situation. Please take the survey to help improve ER mental health treatment. I hope by taking this survey ERs will listen to how to improve things!

Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?

The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.

Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.

Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.

In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.

Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!

I have some great news! I was able to ask Dr. Steven G. Potkin, Professor of Psychiatry in the Department of Psychiatry and Human Behavior at the University of California, Irvine (UCI) Medical Center, some questions regarding the negative symptoms of schizophrenia. He is also the Robert R. Sprague Endowed Chair in Brain Imaging. It was a brief, by email interview, but I’m happy to share what I’ve learned with you all! The following is the Q&A:

Kristin:What are negative symptoms?Dr. Potkin: “Negative” does not refer to a person’s attitude, but instead to a lack of characteristics that should be present. Symptoms include reduced amount and content of speech, even when encouraged to interact (alogia), lack of emotional and facial expression (affective flattening), diminished ability to begin and sustain activities (avolition), decreased ability to find pleasure in everyday life (anhedonia) and social withdrawal (asociality). [1][2]

Negative symptoms can appear a few years before other symptoms appear in young adulthood in the so-called “prodromal” stage of the illness.[3]Unfortunately these symptoms often go undetected because they manifest themselves as issues common among teenagers: social withdrawal, problems with school work, irritability, depression and sleeping problems.[4]

Kristin:Do all people with schizophrenia have negative symptoms?Dr. Potkin: No, but at any point in time, negative symptoms can affect approximately 50 percent or more of people with schizophrenia.[5][6]

Kristin:How do negative symptoms affect a person with schizophrenia? How do they affect their family and friends?Dr. Potkin: Research suggests that for people living with schizophrenia, negative symptoms are key factors in poor quality of life as well as problems with personal hygiene, school and work performance, maintaining relationships, interacting within the community, and participating in social activities. [7][8][9][10]

For caregivers of people with schizophrenia, negative symptoms may cause more burden than do other types of symptoms as they see their loved ones life isolated and lacking in meaning or joy. [11]

Kristin:How are negative symptoms currently treated?Dr. Potkin: Current treatments for schizophrenia focus on reducing characteristic symptoms and can include both medication and psychosocial interventions.[12]No effective medication treatment has yet been approved for specific treatment of negative symptoms. Despite progress in the medication side of treatment, there are still unmet needs in terms of symptom control. A large study found that despite treatment, approximately 57 percent of people receiving treatment for a schizophrenia spectrum disorder still had at least one negative symptom.[10]

Kristin:What is the research that Genentech is doing regarding negative symptoms?Dr. Potkin: Researchers at Genentech are pursuing new treatment strategies for schizophrenia, including increasing N-methyl-D-aspartate (NMDA) receptor activity in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.[7][9][11][12]

Specifically, through a clinical trial program, Genentech is looking at an investigational medication for people with schizophrenia, including people who experience mostly negative symptoms of schizophrenia, despite taking medication. For more information, please visit www.SearchLyteschizophrenia.com

Kristin:How can family and friends of someone with schizophrenia help someone with negative symptoms?Dr. Potkin: Caregivers can talk to doctors about interventions including medication, psychosocial rehabilitation (work, school, relationships), medical care and wellness, and therapy (e.g. cognitive behavioral therapy and peer support groups), as well as ongoing clinical trials.[13] They can work with physicians to find the medications and non-medicine therapies that are right for their loved one. Different medicines may have different side effects. Caregivers can also consider programs from the National Alliance on Mental Illness (NAMI) including:

Kristin:Do scientists know the biological mechanisms involved in negative symptoms? If so, what are the areas of the brain and/or mechanisms involved in negative symptoms?Dr. Potkin: In the 1970s, the “dopamine hypothesis” of schizophrenia emerged, suggesting the biological basis of schizophrenia was an excess of signaling by dopamine, a chemical messenger in the brain. This theory, however, could not explain negative or cognitive symptoms.[6] In the late 1980’s a newer theory suggested positive, negative and cognitive symptoms could all be due to reduced function of NMDA receptors in the brain. This theory is now known as the “NMDA receptor hypofunction hypothesis.”[6][7][8][9]

Researchers are pursuing new treatment strategies for schizophrenia, including increasing NMDA receptor function in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.[7][9][11][12] It is thought that NMDA receptor activity is an important pathway in psychiatric disorders, especially schizophrenia.

End of article.

*Note: I would like to thank Dr. Potkin for helping me put together this interview. This research is very exciting and I hope that negative symptoms can be tackled in this decade! I know how debilitating they can be!

Hi! Just wanted to post this to ask people to please sign the petition to the President and Congress to increase funding for research related to finding cures for mental illness. It only takes a minute! Please share with your friends too!

In the United States in the past week we have been shocked and devastated by public shootings. First in Oregon at Clackamas Town Center, then in Connecticut at an elementary school and then in Las Vegas at a hotel. Most people, myself included, are horrified at the violence. Naturally, we now all seem to be debating about how to prevent these senseless acts. Some people latch onto gun control, some people latch onto our violently oriented culture, and some people latch onto mental illness as an issue. I honestly don’t know that there are any answers or actions that society can make as a whole to prevent things like this happening in the future, but this bit of rant is not about answers exactly. What I want to talk about is what is NOT the answer.

What is NOT the answer is scapegoating any one group of people. From my perspective as a person living with mental illness, I am (of course) sensitive to people ranting about how the mentally ill should be locked up or about how all of the shooters must have been mentally ill. Honestly, we don’t know enough about the situations or people to comment. What I have to say time and time again is that statistics bear out the fact that mentally ill people are generally not violent and are, in fact, more likely to be the victims of violent crime than the perpetrators of violent crime. People with mental illness are often more of a threat to themselves than to anyone else. Even if all of the shooters turn out to be mentally ill, that does not mean that all people with mental illness are violent. We can note also that all of the shooters were male, but that doesn’t mean that all men are violent and that all men should be locked away from society or have their rights stripped.

It is distressing to me that so often the conversation will turn into attacks on mentally ill people aka “the crazies” and how to keep them away from “the rest of us.” There are literally millions (or more) people living with mental illness who never harm anyone. If someone is violent AND mentally ill, that does not mean they are violent BECAUSE they are mentally ill. They are violent, because they are violent. We should focus our energies on how to make the world a less violent one with people who are less violent, not perpetuate stereotypes and attack other humans who have done nothing wrong.

Hi! As you might know if you have scanned my blog, I make it a point to talk about mental health/illness, because I have schizophrenia and I believe in stomping out the stigma of mental illness. Well, I have this cute story to share! I was waiting outside of the classroom for my biology lab class to start this fall and started talking to a supernice girl who was in my class. We got to talking and to try to explain why I had been in school so long I decided to tell her that I have schizophrenia. Lo and behold she says “oh yah, my mom has bipolar and my brother has schizophrenia too!” What a small world!!! It turns out her whole family is active in the mental health field in advocating for the erasure of stigma related to mental illness and they have a website called http://bringchange2mind.org/ . I am always surprised when I talk to people about my own illness and then they also know someone or are someone with mental illness too! It is such a big thing in peoples’ lives and when we talk about it, it is surprising/amazing/wonderful that we aren’t alone in our struggles. So, I just wanted to share this little story and a link to the Bring Change 2 Mind website. It was a wonderful feeling to meet someone else at school who knows first hand about mental illness and to be able to talk openly about it! :) Three cheers for no more stigma!!! :)

Hey Everybody! I wanted to share with you this cool genetics testing that is available to people. I just got it done, because my nurse practitioner ordered it and Medicare pays for it. (Medicare pays for this testing, because it saves a LOT of money and can save lives!) It is really cool, because it tells you how medications will interact with your specific genetic makeup! It is extremely important if you are taking really any kind of medication. For example, had I known about my results before I took Wellbutrin years ago, it would have saved me from basically having a manic reaction to the medication. It turns out that I metabolize differently than normal on some of the metabolic pathways. This means that I will metabolize the meds on those pathways different than people without this issue. If you have Medicare, I strongly urge you to get this testing done. It could save your life from a bad genetic-medication mistake. I think many other insurance carriers might also pay for it. It also explains why I can take a lower dose of many medications and still get the desired effect from the medication. I would say that anyone who is trying to figure out their psych meds should really get this testing done too. It doesn’t just tell about psych meds though, it tells about stuff involving all other sorts of meds. Seriously, this is pretty awesome! Again, here is the link: http://www.genemedrx.com/

Hey everybody! The Cure Alliance has launched their 50-50-50 campaign to raise awareness about mental illness. It stands for 50 states, 50 magnets in 50 days. They want to get their mental illness magnets in 50 states in 50 days! YOU can participate! The first person from each state to contact them gets their choice of a free magnet for their car! Just email them at this address: info@curealliance.org. Also, you can buy them from their store HERE. I think they are good for other things too, like to stick on lunchboxes or bikes or anything a magnet will stick to!!! Please also like their Facebook page HERE.

It stars Eric McCormack (of Will & Grace fame) as a university professor, author and crime solver who is also living with schizophrenia! I’m always skeptical of depictions of people with mental illness on TV and in movies, because they usually make them out to be psychopathic killers or something. I’ve watched the first two episodes of the show so far, and I think they do an excellent job of making the character seem like a regular human being! It is so fantastic! They use the hallucinations as kind of a dramatic device and employ some other Beautiful Mind-esque devices to try to make it like the viewer can see what the character is seeing. Some commenters have argued that it doesn’t show the horrific aspects of schizophrenia enough, but I personally like that they are showing him to be a regular person, and an intelligent one at that! I like that they show him holding down a job, interacting with people socially, and using the help of other people to reality test. I’m excited to see how the character and the show develop and I hope it gets picked up for another season! Please check it out if you get a chance! Again, it is on TNT Monday nights. Here is the TNT link: http://www.tntdrama.com/series/perception/

I’m taking a Women’s Studies course at school and we are looking at the topic of Motherhood. This week we are discussing motherhood and disabilities, and I came across this wonderful video series that is made by a student about a mother who has schizophrenia and how it has impacted her life and the life of her daughter. I think he did a really good job! The video is divided into four parts and I hope you watch all four parts! :)

I wanted to report that yes, I’m still getting the Haldol injections now once every three weeks. Haldol is an antipsychotic medication used to treat psychosis like that found in schizophrenia. I have schizophrenia and started getting the Haldol injections back in late 2000…I guess it was November or December of 2000. The Haldol injections combined with all the other meds I take have been a miracle for me.

So far (knock on wood) I haven’t had many side-effects from the medication. I haven’t yet developed tardive dyskinesia. I hope that I don’t.

I had to start getting the Haldol injections, because I couldn’t take my medications as prescribed. It sounds like a simple enough task, but my illness got in the way of me adhering to my medication regiment, and I’d wind up going off my meds and going crazy. I’ve had a good run with the Haldol. I haven’t been hospitalized since starting it, and if you know anything about people with mental illness, that is quite a feat! :) Without the injection form of the medication I’m pretty sure I’d still be bouncing in and out of insanity and in and out of hospitals.

Haldol is a powerful medication, and not one that people enjoy taking. It can cause a lot of sedation, but in the right dose with the right brain it is a miracle drug. It doesn’t work for everyone, and I probably wouldn’t extoll the virtues of it if I was taking the oral form of the medication. With the injection form of the medication I am able to take less of the medication while still getting the benefits of it. I believe that there are also short-acting Haldol injections for acutely psychotic patients, but I am getting the long-acting injections which metabolize over a number of weeks.

I know that a lot of people, including people with schizophrenia and other brain diseases, are afraid of getting injections of medication. If you are paranoid and psychotic, like I was when I first got the injection, it is terrifying to get the injections. I actually believed that the doctors were giving me a lethal injection to kill me when I got my first dose. It turns out that it was the best thing that ever happened to me, not the worst. Now there are other medications that come in injection forms too. Meds like Risperdal and others. If Haldol doesn’t work for someone then maybe one of the other injectables will work. At any rate, I think it is worth giving them a try. It may take awhile to get used to the meds and to get the correct dosing, but it is worth it in the end.

I thought I’d do a little mental health update, since it has been quite some time since I’ve blogged about my overall mental health. As some of you dear readers may know, I have schizophrenia. I first had issues with it when I was about 15. My first hospitalization was when I was 16. Towards the end of 2000 I got mostly stabilized with my Haldol injections and Zoloft. I haven’t been in the hospital since then! Yay! Quite a long run I’ve had and I hope it continues! For quite some time I had problems getting things done, being motivated and feeling down…that sort of thing, even though I was mostly fine. I think it was last year that I started taking Abilify and it has made a HUGE difference! I’m still taking Zoloft, Buspar, Haldol and some non-psychiatric meds in addition to the Abilify, but the addition of the Abilify was great. I’m doing really pretty well these days. Sometimes I have anxiety, although I think it might generally be related to performance issues with school. I also tried taking Topamax to help with weight loss, but I thought it might be making me stupid and giving me more anxiety, so I quit taking it. I think overall, the Topamax was not helping. It seemed like I was becoming less motivated and more sad with it. I also had that bad anxiety day that I wrote about recently.

So, I think I was just hoping for a magic weightloss bullet with the Topamax. It didn’t work. Boo. I have lost about 90-100 pounds though which is good, but I still need to be less sedentary. I’m also a believer in fat acceptance, but of course it is hard to say that I never want to try to lose weight. I would be an even bigger believer in fat acceptance if I wasn’t actually fat I think!!! hahaha. I know that sounds ridiculous, but it is kind of true. I can accept the hell out of everyone’s fatness, but my own! lol.

Anyway, enough about fatness for now. What I want to say is that I’m doing well on the whole. My sleep patterns have improved with my sleep apnea machine, and while I’m not sleeping on any kind of normal schedule yet, I’m getting sleep every day and mostly at the same time! I still tend to be somewhat paranoid, but I’ve found that opening up with people over the years on the internet has really helped me to realize that I don’t need to be afraid of everyone in the world. I still have some delusional thoughts that blow through my brain now and then, but I consider them to be more of a slight annoyance than a big deal right now. But seriously, it is because of the medicine. If I wasn’t taking my meds, and doing so faithfully, I would be in and out of hospitals and massively psychotic. Some people don’t believe me, because I “seem so normal,” but I have to wonder what THAT means anyway? And, I don’t know, it seems like I should be insulted when people say that to me, but I’m not sure why I find it so insulting! I don’t necessarily want to be abnormal, even though I pretty much am, but I think it just bothers me that people attach a kind of value judgement to the term “normal” as if “normal” is superior. It is definitely easier to live in the world if you are “normal,” but it isn’t the only way to be in the world, that’s for sure. Normal is just such a peculiar word, no?

So, I’m doing fine. Some anxiety here and there, some weird thoughts here and there…a depressed mood now and then, but mostly just good. Which is nice. Thank you meds and thank you lucky stars! So, that’s my update after living with schizophrenia for 24 years. Wow! 24 years! Man am I getting old!!! LOL.

OMG I was so excited when someone bought one of my fabrics! You have no idea how thrilling it is!!!

I’m quite a boring person…obsessed with making cats and doing math homework! hehe. Thank god the anxiety has calmed down quite a lot, so I can go about my business and get stuff done!!! What a relief! :) :) :)

Sometimes I get terrible anxiety that I can’t seem to make go away. I try my usual coping mechanisms like eating (bad idea), and obsessing on the computer (bad idea), but those don’t help. Sometimes I plop down in bed and try to relax my way out of the anxiety. It probably doesn’t help that I drink a lot of coffee, but I really feel like the coffee doesn’t do much to me. It feels more like a different kind of anxiety than a coffee-induced jittery type anxiety. Lately, I’ve tried focusing my anxiety into doing productive things like making cats and cleaning and doing homework. Sometimes I can harness it and actually get stuff done. Other times I’m too agitated to concentrate. The making cats thing seems to help a lot, because it involves using my hands and my imagination and I can sort of zone out on it. I also have to focus on details which is helpful. I feel guilty that I’m making cats instead of doing my math homework sometimes, but there are times when I just can’t motivate myself to do math–like tonight. I really really need to do my math, but I’m not doing it. So, I could either start on a new cat or just fritter away my time doing nothing. I think I might start a new cat despite the guilt of not doing my homework. I do take Buspar, which is an anti-anxiety medication, but it doesn’t seem to do all that much. I think part of it is that I need to figure out why I’m so keyed up. I know that part of it is that I’m worried about my school work. Perhaps another part is that my parents just came back home after being gone for three months to Arizona and I’m having to go through some adjustment having people back in the house again. It is just an adjustment I think I need to get used to. Anyway. Writing about it has helped a little I think.

I was just posting about this on Facebook, so I thought I’d drop a note about it here too. According to Scientific American Mind, May/June 2012, one of the changes that is coming to the DSM-5 (aside from dropping the roman numerals) is that they will be getting rid of the category of Asperger’s. Instead, people with this disorder will be labeled on a spectrum disorder with levels of severity noted. I’m including the short article here, so you can read more about it. It was kind of surprising to me to hear about this. I know that there are a lot of people with Asperger’s who have parts of their identity wrapped up in the diagnostic criteria. It would be like them getting rid of schizophrenia I guess. Suddenly some part of your identity is renamed. It is kinda strange. I don’t know if it is good or bad. That is part of the tricky thing about mental disorders and labels…most people with a mental disorder usually wind up having some part of their identity tied to a label. For good or bad or whatever…it just seems to happen.

I was just informed of this great project called Schizowhat? that is a website aimed at raising awareness about schizophrenia. For those of you who don’t know, I have schizophrenia. I was first diagnosed when I was about 15/16 years old. I hope others of you who are interested or in some way impacted by schizophrenia will check out the website and contribute! Let’s fight the stigma! Yay!